Update on my mum

[Fox78]

Hi all

I posted a while ago on my mums diagnosis of lung cancer stage 4 N1 M1

I just wanted to give an update on treatment to see if anyone has had similar and how they are doing really

Mum has been offered combination chemo and also immunotherapy every 3 weeks consisting of Pembrolizumab

Carboplatin

Paxciltaxel

Has anyone else had this combination and how were they with side effects ets?

We have just come back from a week in Devon mum was struggling slightly with pain relief she struggles to take tablets it’s not the cancer she has always struggled to swallow them so is taking oramorph and dissolvable anadin which I’m not sure is really working as she was in a lot of pain one day also asleep a lot and not really eating much it’s the first time I’ve really seen any of these symptoms she’s also struggling with being constipated has tried various things and it’s “all of nothing”

The oncologist has advised that there are bony mets in the spine and rib and multiple pulmonary lymph nodes affected

Just wanted to see if anyone has experienced the same and any advice on other pain relief such as patches liquid etc?

Thank you take care all

[GUI-19]

Hi I had problems with pain relief originally and the palliative care team helped a lot so it’s worth getting them involved it’s not just for end of life care. I have morphine patches - they last 3 days and you can have variable levels and I also take pregabalin for nerve pain - they’re capsules so easier to swallow.I’m also on chemo - carboplatin and pemetrexed every 3 weeks. I have mets in spine liver peritoneum and who knows where!!

I’d definitely recommend palliative care team as they have time to discuss and visit which helps if your mum is anxious.

Good luck and best wishes x

[Fox78 in reply to GUI-19]

Hello

Thank you for your response I really appreciate this, I have already asked about patches but was told no by the consultant but this was before she went to see the oncologist the other week and we are due to see them again on Thursday before she starts treatment on Friday. I will see if we can look the get the palliative care team involved as I think she is struggling taking things in water a lot

I wish you all the very best too with your treatment x

[Bow-19]

I agree with GUI 19 I have had very good care from a Palliative Care Consultant a few years ago. She knew now to combine pain relief drugs and how to slowly increase and decrease them. Does your Mum have a MacMillan Nurse or District Nurse visiting her at home? I have found them to be very supportive re pain relief and constipation too. They will also have links with Palliative care, which as said before isn’t just end of life as people think.

I have dipped in and out of Palliative care numerous times due to my symptoms. Prunes might help with constipation. If not the District Nurses have lots of ideas and combinations of ideas. Your Mums GP surgery will be able to refer you to District Nurses and MacMillan.

Lung Cancer Nurses at the hospital also useful. Hope your Mum gets more sorted soon. Some things are definitely trial and error xx

[Fox78]

Thank you I really appreciate that I am going to speak to the GP because we haven’t been assigned to anyone like that and she is due to start treatment this week and we’ve just had a call from the nurse explaining all the side effects of chemo and the fact she won’t be able to go out etc

Mum is on her own as we lost my dad 6 years ago to cancer and I’m an only child so to be honest I don’t feel like we are getting much support from the community but appreciate we haven’t asked yet

Thank you x

[JanetteR57]

it can all be a bit overwhelming especially when usual access to resources and help via GP surgery or hospital are much lower than before the pandemic... painkillers often cause constipation but things can be done to relieve that - moving about, drinking more water, as well as stronger interventions which nurses can suggest. I remember finding a practice nurse really helpful after my lung surgery who explained how the different pain meds work as I'd come off the major ones too quickly fearing addiction but she explained the need for different types to be used together (not from the same 'family') for better pain management.... you could ask your GP or pharmacy if they have a pain management nurse you could speak to but if your mum has access to a lung nurse (often called a CNS) she could also ask them.... try not to google as much of the information is out of date and inaccurate but for trusted information regularly updated, Roy Castle lung cancer foundation has information on not only treatments, testing, but also living with the effects of lung cancer.... so you may find this helpful - they also have a nurse led helpline for those affected by cancer (not just patients) to call and online patient/relative sessions to learn more about what might be involved... good luck to you both.... roycastle.org/about-lung-ca...

[Fox78 in reply to JanetteR57]

Hi there

So I’ve managed to sort pain relief patches and upped her oramorph so I feel happier now hopefully this combination will work better I’ve also sorted a referral to Macmillan for them to come and see her to asses the situation

Thank you for taking the time to respond I will let you know how we go with treatment x

[JanetteR57 in reply to Fox78]

so glad you now have some better pain support for her.... good luck to you both.

[Fox78 in reply to JanetteR57]

Thank you so much appreciate the response xx

[Kayseez]

Hi Fox78,I am sorry to hear that your mother is having such a hard time. I also have stage 4 lung cancer. I am 69 years old. I hope that I may be able to help a bit, though of course we are all different. I have not (so far!) been on chemotherapy. I have been on immunotherapy Pembrolizumab for a year. My recent scan results have been 'stable' which I am told is 'what we like to see'. I have recently had some bad pains in my right shoulder and arm. We are waiting for a scan to find out more about the reason for this. I have a number of different pain meds. Oramorph Oral Solution 5mls when needed. I have been told though that I can increase this to every 2 hours if necessary. I also take morphine modified release capsules 30mg recently increased to 40mg because of the arm pain 2x a day. Easy to take because they are capsules.

As for constipation I take Docusate and Senna which work very well for me. I don't know whether they are able to increase her dose.

I fully agree with GUI-19 that the palliative care team are wonderful, it is not just end of life care. My daughter contacted my GP as she was very worried about me and the GP provided a palliative care referral. They have been so helpful, they look at all aspects of your life and ways to help make things manageable.

My thoughts are with you and your mother. Take good care,

[Fox78 in reply to Kayseez]

Hello there

Thank you for your response

So I’m going to speak to the gp about the care team in the community to see what they say

Can I ask why are you just having immunotherapy and not chemo too as I think my mum would prefer just to have immunotherapy to be honest!x

[Kayseez]

Hi, you asked why I am on Immunotherapy alone. This is because I have PDL1 expression which not everyone has. But you could try asking whether she has been checked for this.

[Fox78 in reply to Kayseez]

Hi so mum is having immunotherapy but also chemotherapy too x

[sassassas]

Hi Fox78 I'd like to give you some reassurance about the chemo that your mum is being offered. My husband had 4 cycles of Carboplatin & Paxclitaxel with 2 immuno drugs (Avastin and Tecentriq - Avastin helps prevent the cancer building blood vessels whilst the tecentriq targets PD-L1. Pembrolizumab targets PD-1. Tecentriq is only any use if the cancer has high PD-LI expression as Kayseez said). After the 4 cycles, he dropped the chemos and now just has the 2 immunos every three weeks.

You are right that the immunos are much easier to tolerate than the chemo drugs, but the chemos are (in our experience) nowhere near as difficult as chemo is made out. The anti-sickness drugs worked brilliantly so he wasn't sick (there are various different types so if your mum is feeling nauseous, tell the cancer nurse and they should be able to prescribe something else). He didn't really have any mouth issues by working really hard on good mouth hygiene and corsodyl mouthwash which the dentist recommended. He used aveeno shower gel and hand cream instead of soap and did lose his hair, but its growing back beautifully now! He drinks kefir and kombucha to help his stomach lining and boost his immune system. The one thing that was difficult was the constipation and he'd recommend drinking masses of water before and during, all bran, prune juice and a little lactulose.

Chemo isn't what any of us want for ourselves or our loved ones, but his results were amazing - after just 2 cycles, it knocked back almost all his tumours - even one that was 8cm long. Like your mum, he had so many mets in his bones but they've gone from the scans now. He has so much more energy now too, almost back his usual self, though the immunos do cause some fatigue too.

Hope that's helpful for you both. Best wishes to you xx

[Fox78 in reply to sassassas]

Hello there

That’s so positive to hear thank you! I am really worried of the effects understandably but I can tell my mum this and hopefully reassure her thank you so much for sharing and also with the tips for mouth care etc

We’ve been told today it’s 4 sessions with chemo then immunotherapy every 3 weeks so the same as your husband

I’ve also managed to sort out a slow release patch for 7 day intervals and a higher dose of oramorph so she doesn’t need to keep taking soluble anadin so thanks to all who have recommended this I have also asked for a referral to Macmillan to come and see her at home

Take care and please stay in touch and let me know how things go x

[diane55]

Hi It was 2019 when I started immunotherapy combination which was reduced to just ketruda immunotherapy .On my third cycle I felt I was on my knees really struggling .Constipation was a problem I decided to take the three day approach before I took laxido probably 2-3 for one day and then just one ducolax before I went to bed .The trouble is that night would be very uncomfortable so I would also take a strong pain analgesia .This created a pattern that worked for me .But speak to the oncology nurses they should advise you .I also had problems with my thyroid gland and at one point my liver enzymes were raised I had a range of aches and pains.However once the treatment stopped I became stable just on the immunotherapy for 18months with less side effects just on immunotherapy usually 4_5 days so keep going expect to feel poorly until the chemo aspect stops ,drink lots and eat gently what ever works .Tell your Mum she will go down for a while, get her to rest loads and potter a bit .Knitting is really good hospitals often want twiddle muffs for dementia patients or baby hats ,distraction is the key when you cannot be physically active .Read paint draw what ever .Focus on something else .I was so glad I had hobbies I had not knitted since my early 20's but it calms you down .I am the worst knitter ever but hey it was still worth doing. Take care and wishing your Mum well, Diane

[Fox78 in reply to diane55]

Thank you Diane

Appreciate your response it’s good to hear from people who have gone through this, I’ve already told her she needs to get through the 4 sessions of chemo/immuno but then things will get better and I’m making sure she gets the best if everything and trying to do as much as I can to support her, I feel happier now I’ve got her pain relief patches as taking soluble was an issue it was just making her feel rubbish

I will update once we start to let you know how we are getting on

All the very best for your treatment too take care Katy x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Fox 78,some really great advice above and as the others have said palliative care ( sometimes now referred to as supportive care) are the experts on dealing with side effects from treatment and coping with pain. Painkillers come in many different types of preparations, tablets liquids, granules, patches etc once the palliative care team are involved they can best titrate the dose and type of painkiller required and also advise on laxatives and anti sickness medication which can all work together to make your mum feel comfortable but without making her to sleepy.

If there is anything you would like to discuss you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Kimidge]

Constipation try apricots